Not Satisfied

[Poodle<3]

I have a few questions for knowledge celiacs and non celiac gluten sensitive individuals.  I am now 28 and have had GI symptoms since 11 years old.  I was diagnosed with IBS, as celiac testing was not as common 17 years ago.  I then went on to be diagnosed with epilepsy, anxiety, depression and non-diabetic hypoglycemia..  As I aged in to my mid twenties I started having major muscle pain, joint pain and migraines.  My doctor finally tested me for celiacs with ONLY the deamidated gliadin peptide antibody IGG appearing high (41 with anything over 20 considered high).  I have a low white cell count due to my epilepsy medication, which I have read can affect the serum tests.  The dr. did perform an endoscopy and biopsy which came back negative for celiacs but positive for acute gastritis.  The doctor ended up diagnosing me with gluten intolerance and told me to go on a gluten free diet with no other information.  I know the diet is the same for celiacs and gluten intolerance, however autoimmune diseases run in my family (brother has ulcerative colitis and eczema, mother has eczema and other stomach issues).  I just want to make sure this diagnoses is correct, because I know celiacs runs in families.  My dr. does not think my other family members need to be tested for celiacs, as she said the biopsy proved it is not celiacs but the elevated DGP igg  is only gluten intolerance.  What do you think?  Any advice would be great.

 

Serum tests include:

TTG IGA result 1 (normal range is > or = to 4)

DGP IGA results 2 (normal is > or = to 20)

DGP IGG result 41 (flagged high) (normal is  > or = to 20)

Immunoglobulin A result 139 (normal 81-463)

[GFinDC]

Welcome to the forum Poodle3!

Your doctor seems to be going by the usual celiac disease testing criteria, and looking for both a positive antibody results and positive biopsy result.  Without both of those being positive, many doctor won't diagnose celiac disease.

However there, are some times when other indicators can be used.  It doesn't seem your antibodies fit that situation though.  See below.

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Can you confirm celiac disease from only a blood test?

Never, in fact. Other variables must be part of a diagnosis. New guidelines in 2011 allow for diagnosis without a biopsy, but only in very rare cases. In these rare cases at least one of the genes must be present, both tTG and EMA blood tests must be more than 10x normal, and there must be a positive response to a gluten-free diet. Because the above cases are so rare, the gold standard for diagnosis is still an endoscopic biopsy of the small intestine. Read our 2012 Q1 Newsletter, “Open Original Shared Link,” to learn more. March, 2016

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Yes, but only after celiac disease has been completely ruled out as the cause of the symptoms. We recommend an elimination diet only under the supervision of a medical professional.

(Updated January, 2013.)

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There are no tests to diagnose non-celiac gluten sensitivity at this time. Which means, no research has been through a scientific, evidence-based, peer-reviewed study that proves what some labs claim as a way to detect non-celiac gluten sensitivity. Read more about the fallacy of stool tests to diagnose celiac disease and/or non-celiac gluten sensitivity.

(Updated March, 2016.)

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So your doctor is not doing it wrong, unless they didn't do 5 to 6 biopsy samples as recommended.  But, the idea that you have NCGS because of a high DGP IgG test is wrong, because there is no testing approved for NCGS.

My guess would be that you do have celiac disease, but that for some reason, it was not detected by the biopsy.  You are correct that it would be good to have your relatives tested for celiac disease.

[Awol cast iron stomach]

Hi Poodle,

gluten-free in DC is helpful at this . I am in no man's land for Celiac and NCGS as well. gluten-free in DC helped me with my frustration with the ambiguity. Similar to you 20 years ago I was diagnosed IBS on symptoms only.  In 2016 I was told the endoscopy did not indicate Celiac. ( I however went gluten-free for 3 1/2 years prior in frustration , for no one thought  to test me over the years, my symptoms and manifestations got worse . I was desperate to get control of my health, my husband ,a published research study I read , and celiac.com allowed me to realize, my goodness I'm not IBS I'm undiagnosed Celiac! Amazingly I went gluten-free, it worked, in 2016 after a terrible visit in a restaurant I was glutened badly and my symptoms escalated with newly added joint pain on the scene. I went for testing  including the gluten challenge ).

Now I see pictures posted by those celiacs with DH and realize I am looking at the Puppp rash I was diagnosed with 12 years ago. My doctors quote when I complained "oh it's nothing, it's just Puppp. I'll give you cream for it."  My husband and I now know it was likely misdiagnosed DH.  I try not to think about this as it was very dismissive at the time . I believe this manifestation was the biggest missed opportunity in my medical history to have tested me for celiac before I went self induced gluten-free . It is upsetting as I spent 9 more years after that eating gluten .   It took months to go away and the topical they gave me was useless. My husband even looks at the other photos someone shared and says yep same rash. Up until 2012 I would get that flare on my elbows and knees it went away when I was dedicated gluten-free for a full year consecutively. Now I can trace many of  the known celiac symptoms going back in my memory as early as 5 years old.

My list of symptoms match many of the known 300 and the number and severity got worse over the past 20 years . Whether Celiac or NCGS you deserve to know but science/medicine just still frustratingly miss some of us- still. It doesn't matter in regards to a full commitment of gluten-free life. The not knowing can be challenging. I only made it through 6 consecutive days of my gluten challenge, if I recall they took 8 biopsies of me, they noted gastritis, and Barretts, ruled out IBS, and true IgE allergy to wheat. They could not confirm Celiac gold standard. My cousin in diagnosed Celiac. They did suspect I was having immune  and food issues. I had to go off many foods, I had to remove 8 foods, all processed goods, and ate very clean. I am now down to a diet free of gluten, corn, and cow dairy. 

Your not alone I wish you luck, continue gluten-free, (you sound so similar to me), and perhaps sadly but slightly validating another relatives results will reveal Celiac. Otherwise one day technology will catch up to me and you.